She went on disability, but the company she worked for could carry her insurance for only so long. So she found herself with mounting medical costs and far too little money to pay for them.

Also suffering from a chronic neurological syndrome called RSD, diabetes, rheumatoid arthritis and several other conditions, she turned to the Tippecanoe Community Health Clinic for help.

“If it weren’t for them, I wouldn’t be here today,” she said.

She still has some company disability today, as well as Medicare and Social Security. But that’s not enough. “I scrape by,” she said.

On Monday, about 15 area health care professionals gathered at Ivy Tech Community College for a meeting with state Family and Social Services Administration spokesmen in an effort to find a solution to the problem of Hoosiers with little or no health insurance.

It was the 13th in a series of 14 meetings around the state to gather ideas in the hopes of proposing some type of state legislation in 2007.

“Indiana has the highest per capita rate of medically bankrupt families,” said Jeanne LaBrecque, the director of health policy and Medicaid for the state’s FSSA. That amounts to more than 77,000 Indiana residents.

As health costs continue to rise, employers are shifting more of the costs to their employees — or worse, LaBrecque said.

“Many employers are dropping coverage in general,” she said. Between 1999 and 2004, Indiana had the second-highest drop in employer-sponsored health insurance in the nation.

Some ideas being tossed around include using a new tobacco tax to help offset health insurance costs, simplifying the contribution process of pre-tax dollars for health insurance, making health insurance portable from job to job, and creating some type of statewide marketplace where small businesses and individuals can shop for cost-effective health insurance.

“We need to solve our own problem,” LaBrecque said.

Sally Watlington is the chairwoman of the board and former CEO for the Community Health Clinic. “The system is broken,” she said, adding more than 50 percent of the clinic’s patients are uninsured or underinsured.

But the fix won’t be easy.

“It didn’t get broken overnight,” Watlington said. “It’s not going to get well overnight.”

Several months ago, I received an e-mail from a very concerned reader looking for information about reflex sympathetic dystrophy.

RSD is one of the most frightening and misunderstood neuromuscular problems there are. I have had patients develop RSD after a simple ankle sprain, major trauma or prolonged casting. The body seems to overreact to the trauma, and the neuromuscular system goes haywire.

The current wisdom in pain management classifies RSD as chronic regional pain syndrome. CRPS is a malfunction of the nervous and immune systems as they respond to tissue damage from trauma or after a period of immobilization.

The sympathetic nervous system seems to assume an abnormal function after the incident. The original injury initiates a pain impulse carried by sensory nerves to the central nervous system. The pain impulse, in turn, triggers an impulse in the sympathetic nervous system that returns to the original site of injury. The sympathetic impulse triggers the inflammatory response, causing the blood vessels to spasm, leading to swelling and increased pain. The pain triggers another response, establishing a cycle of pain and swelling.

CRPS is divided into type I (reflex sympathetic dystrophy) and type II (causalgia). Causalgia is damage to a major nerve trunk. In RSD, there is usually damage to some very minor nerves.

Some experts believe there are three stages associated with RSD, although this progression has not been validated by clinical research.

RSD stages

# Stage one: Lasts from one to three months and is characterized by severe, burning pain, muscle spasm, joint stiffness, swelling, rapid hair growth, and alterations in blood vessels that cause the skin to change color or temperature.# Stage two: Lasts from three to six months and is characterized by intensifying pain; swelling; decreased hair growth; cracked, brittle, grooved, spotty nails; cold, pale, blue, moist skin; thinning bones; stiff joints; and weak muscle tone.# Stage three: The syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss, severely limited mobility, and involuntary contractions of muscles and tendons.

PAUL J. MACKAREY, P.T., D.H.Sc., O.C.S, is a doctor in health sciences specializing in orthopedic and sports physical therapy. He is in private practice and is an affiliated faculty member at the University of Scranton Physical Therapy Department. His column appears Monday. E-mail: rpmackarey@msn.com.

(WCCO) Imagine doing something as innocent as stubbing your toe and developing an unbearable pain that won’t go away. For years, a lot of people were told it’s all in your head. But new research has shed light on something called Complex Regional Pain Syndrome.

Rachel Heisler, 11, was diagnosed after a minor foot injury during gymnastics triggered agonizing, non-stop pain. Now, nearly any vibration at all can bring her to tears.

“The microwave beeping, the phone ringing. So everyday noise would make it worse,” she said.

Dr. Robert Schwartzman is an expert in CRPS. He said it’s a chronic pain ailment brought on by even the slightest injury to nerves or nerve endings.

“It starts with severe pain out of proportion to what the injury is. So, you twist your ankle. Then, all of a sudden, it starts to swell more than it should,” he said.

For years, people were told it’s “all in your head,” but Dr. Schwartzman said new research proves CRPS is real. While there’s no cure, Schwartzman said pain medications and some treatments do show some benefits.

“If it got caught early and people understood this, I think we could dramatically stop its devastation,” Dr. Schwartzman said.

It took doctors years to diagnose Vance Hudson. He said the pain has taken over his life.

“I’m no longer employed. I spent a year without any income at all. It impacts relationships. I’m just not the same person I was,” he said.

Hudson and many patients find relief in support groups. He said CRPS can leave you feeling depressed and alone.

Heisler gets a lot of support from her family. She’s improving and is trying chiropractic care. She can get around without her walker now and has big plans for the future.

The National Institutes of Health is funding studies in hopes of better understanding the disease and developing treatments.

PUNTA GORDA — In the two years after Hurricane Charley destroyed her home, Alice Caldwell has faced health problems, depression, financial hardship and enough documentation to paper the walls of her house, once she begins rebuilding it.

On top of that, this month, the 63-year-old faced a Charlotte County code compliance enforcement action.

On July 11, a code compliance officer cited her for having a large, steel cargo container “stored in the vacant unimproved property prior to the construction of the principal use,” along with “outside storage of miscellaneous items.”

The county code compliance office and Caldwell are now working on a resolution of the violations.

Caldwell said, despite her struggles, she feels “blessed” to have benefited from numerous charities that have supported her over the past 24 months and soon, will begin rebuilding her house.

But, Caldwell’s experience shows how, even with a substantial network of charitable organizations, rebuilding for many has proven to be a daunting, protracted task.

“It’s been humbling because you have to ask for help when you’re used to being independent,” said Caldwell. “It’s a lesson in patience. It’s a lesson that you can’t let the anger take over.”

Assessing the damage

Caldwell, with her three children in tow, first arrived in Punta Gorda from Michigan in 1980. She came to take care of her retired parents, who lived in a small house built around a 1954 travel trailer at 6026 Quince St., south of Punta Gorda.

Her parents passed away over the next eight years and Caldwell and her children moved in.

The house was mortgage-free. It wasn’t assessed at a high value, so insurance didn’t seem necessary, she said.

Caldwell worked as a nurse for Charlotte Regional Medical Center for some eight years, until she injured herself on the job.

She twisted her arm while lifting a patient and suffered an “entrapped nerve.” She has since been diagnosed with Reflex Sympathetic Dystrophy, a disorder that stems from the trauma.

“I still deal with chronic pain and symptoms from the RSD from time to time,” Caldwell said.

She has lived on a disability check of less than $800 per month ever since.

Caldwell was out of town when Hurricane Charley struck. She returned two days later to find much of her town severely damaged, including her house.

The windows were broken and the rain had soaked the interior, she said.

There was no electricity for days, so Caldwell cooked on a barbecue grill.

Caldwell received emergency money from the Federal Emergency Management Agency. But, after evacuating for several more hurricane threats in the next two months, and starting hurricane repairs on her house, the money was soon gone, she said.

Then, county building inspectors determined that her house was “65 percent damaged.” The determination meant Caldwell would have to rebuild to modern codes.

The repairs would be more costly than building a new house, she said.

Then, the chest pains began. Caldwell was one of the first patients checked into a local hospital’s emergency room after it shut down for a few weeks due to hurricane damage.

She managed the health problems with medications. But, she was becoming immobilized with depression, she said.

Even the task of writing a letter requesting assistance became difficult.

“I really struggled with that,” she said. “The depression controls you to the point you don’t know where to go.”

Hope and Recovery

About that time, a volunteer from Project Hope knocked on her door. Project Hope helps people recover from disasters.

The volunteer helped her assess her situation and identify the next steps. She then began participating in Project Recovery, a counseling program offered by Charlotte Community Mental Health.

A Project Recovery counselor helped Caldwell establish a plan — to seek assistance from an array of churches and organizations.

“You become knowledgeable and you do what you have to do — with a different attitude,” she said.

The Lions Club helped her get a pair of eyeglasses. The Sacred Heart Catholic Church, the First Baptist Church of Punta Gorda and South Biscayne Baptist Church provided food and cash.

“I know that a lot of my help came from God,” Caldwell said. “God put a lot of these people in my path because I was crying out.”

In early 2005, Caldwell applied to the Interfaith/Interagency Network of Charlotte County for help building her house. She also applied for a Home Again grant through the Meridian Community Services Group to pay for the building materials.

The Interfaith/Interagency Network is “a nonprofit organization trying to assist fellow Charlotte County residents to come up out of the rubble and get full recovery,” said Judy Chardon, the group’s executive director.

Since the hurricane, group has rebuilt two houses and has three houses to build in the near future. The agency has also assisted 96 clients who either had no insurance or not enough insurance to repair houses.

The agency has also assisted 736 people to date, by providing services from advice to volunteer labor. It also has coordinated some 1,400 volunteers who conducted 40,000 hours of labor.

Rebuilding can take a long time because of the array of funding sources involved. Information in applications must be verified and reviewed.

The funding must be confirmed before the construction begins so hurricane survivors aren’t left with an unfinished house, Chardon said.

“There’s so many variables, it’s impossible to give you a reason for every (delay),” she said. “If it was easy, it would have been done already.”

Caldwell’s rebuilding project, for example, hit a snag when Caldwell discovered that the 1954 trailer built into her house had never been accounted for in her parents’ probate cases. That snag took four months to resolve, she said.

YOUNG sailor Kirsten Pollock has furthered her dream of being chosen for the 2008 Paralympic squad with a set of outstanding results in national championships.

Kirsten, aged 26, of Hipperholme, has had a superb summer with a victory in the Scottish National Challenger Championships near Motherwell and second place in the Welsh Nationals at Llyn Brenig near Denbigh at the end of July. She also took second place in a recent regatta on Grafham Water near Huntingdon.“It’s been a great summer’s sailing so far,” said Kirsten, who suffers from reflex sympathetic dystrophy as a result of slipping on the stairs when she was 21.“I am really pleased to have done so well. The competition was tough but my training seems to be paying off.”Kirsten’s determination to succeed has helped her overcome many obstacles and she has travelled the country with her mum Lesley Pollock to attend training courses and compete in sailing races. Finding sponsors willing to support her sport is a constant battle for the former Brighouse High School student and could still hamper her ambition of making it to the Paralympics in China in 2008.Kirsten’s constant companion is her dog Maisy who came to her through the charity Dogs for the Disabled and who provides invaluable help and support around the home.The sportswoman’s Challenger class trimaran is designed to cater for sailors with most disabilities, with easy steering and central seating.“I took myself off for a week’s camping holiday to Cornwall on my own this summer and felt a great sense of achievement,” she said.04 August 2006

He said it’s spread from a bruise on his foot to both legs and his shoulder.

“I’m no longer employed,” Hudson said. “I spent a year without any income at all. It impacts relationships. I’m just not the same person I was.”

Vince is among the more than one million Americans suffering from complex regional pain syndrome or CRPS.

“I don’t think there’s any pain in medicine that’s worse than this. You can’t be touched,” said CRPS expert, Dr. Robert Schwartzman.

Last year, “American Idol” judge Paula Abdul brought attention to this obscure disease when she admitted she suffers from the debilitating symptoms of CRPS. Like a lot of victims, she was told the pain was all in her head. But Dr. Schwartzman said new research proves the syndrome is real.

“One hundred percent,” he said. “There’s no question about this anymore. Zero.”

CRPS has baffled doctors since the Civil War. It happens when there’s an injury to a nerve that causes the entire nervous system to behave erratically.

A minor foot injury at gymnastics practice triggered agonizing chronic pain for 11-year-old Rachel Heisler. Now any noise or vibration can bring her to tears.

“The microwave beeping, the phone ringing. So everyday noise would make it worse,” she said.

Don Roller carries one of those cards people talk about but rarely see — the kind that says he can’t help but set off the airport metal detector.

The “implanted device identification card,” states that Roller has a drug infusion system in his body.

It’s also known as a “pain pump,” a small disc-shaped gadget in his abdomen with a tube attached. It delivers a pain-relieving drug straight to his spinal cord.

“It gave me a whole new lease on life,” said Roller, 63. “It isn’t a miracle thing, it just takes away the debilitating pain.”

But he had to battle with the Department of Labor and Industries, which had refused to pay for the pump.

And now the state is drafting a new rule, due to be released in September, because Roller won a decision in the Court of Appeals.

Roller, a Department of Natural Resources employee currently on long-term leave, has a spinal condition that causes extreme pain – the pain pump operates like an epidural, which is given to women during childbirth.

Roller first injured his back while working in 1992. He underwent six back surgeries before receiving the pump in 2002, all paid for by the state workers’ compensation plan.

Labor and Industries, which runs the workers’ compensation plan, refused to pay for the pump, however.

“Our position on pain pumps is that we routinely deny them,” spokesman Robert Nelson said. “We think long-term use of opiates, the kind of medicine they deliver, compound the kind of problems that injured workers have. They become addicted and need more and more. We have not seen any evidence that there is a benefit to an injured worker.”

Roller used his private health insurance to pay for the pump instead. His challenge, which he won last year, said that the state could have covered the pump under its rules.

Addiction argument

Since the court ruling, worker’s compensation has paid for 28 devices made by the company that produces the pain pump, but exactly how many pumps were paid for is not immediately availible, Nelson said.

The state’s new rule will allow the workers’ compensation program to pay for pain pumps in three instances: leading up to and after a surgery, to control muscle spasms, or for patients with long-term cancer.

“In our opinion, this is not an economic decision by us,” Nelson said. “The potential for addiction, real problems, complications from surgery outweigh the relief patients may receive.”

Roller took morphine by mouth for years, but the painkiller left him disoriented and addicted, he said.

“I don’t know what I was feeling – my dependency or my pain. When I had the pump, it took all that away,” Roller said.

Aid for device maker

Roller and his attorney – backed with public relations help paid for by the multi-billion dollar company that makes the pump – are working to change the department’s mind.

Medtronics, the company that makes the pumps, has sold more than 50,000 since 1982, according to its Web site. A Medtronics representative did not respond to a call for comment this week.

Medtronics hired a public relations firm in the campaign to change Washington’s rules, but not just to sell more pumps, said Bill Hochberg, Roller’s attorney. Every other state workers’ compensation system pays for the implants, and the company wants to see Washington do the same, he said.

“I don’t think there’ll be that many more people who will have the device implanted. They just want to see the right thing done,” he said.

Oregon allows pump

Larry Kroesing, a medical reviewer for the Oregon workers’ compensation program, confirmed pain pumps are covered for injured workers in that state.

“It’s usually reserved for those that are in the worse-off conditions,” he said, noting patients must have chronic pain and use the pump on a trial basis before a permanent implant is approved.

But Kroesing said the pumps are considered a safe way of delivering powerful drugs to patients.

“It’s usually less this way – they have less side effects because they’re taking smaller doses than the oral (method) and it doesn’t have to run through the GI (gastrointestinal) tract and everything else to be effective,” he said.

Studies disputed

But the Department of Labor and Industries points to a report by the University of Washington that said existing studies on pain pumps are unreliable. There was evidence suggesting pump users eventually must increase their drug dosage again to control their pain, the study also said.

“If (Medtronics) could show us, or if studies showed that these things provided permanent relief … we’d probably take a different position,” Nelson said.

The workers’ compensation program’s goal is to help injured people return to their jobs, he said.

“We treat pain so that the person has the mobility to work. We don’t just say, we’ll treat pain for the rest of your life – unless there is cancer … where there is not going to be a recovery,” he said.

Roller did return to work for more than two years after receiving the pump, he said, but has been on long-term leave for the past two years. He is considering retirement. He thinks the workers’ compensation system should help people with permanent pain because of their injures, not write new rules, he said.

“The person who wrote this, they are telling me how bad I’m going to hurt for the rest of my life,” he said.

State Sen. Karen Keiser, chairwoman of the Senate Health Care Committee, said she’s familiar with the dispute over pain pumps and might address them as part of larger policy changes.

“We’re not going to go in there and say, ‘You need to pay for this particular therapy,’ open and shut the door,” she said. “But it is part of the larger discussion. The gold standard again is making injured workers productive again.”

How do pain pumps work?

Pain pumps, also called intrathecal drug delivery systems, are surgically implanted, battery-powered pumps about the size and shape of a hockey puck. They carry a reservoir of medication and systematically deliver it through a catheter to the cerebrospinal fluid that cushions the spinal cord and the brain.

Because the drug is delivered directly to the spinal nerves, far less is needed than an oral prescription – sometimes only 1/300th the amount.

The devices are used to treat a number of conditions, including pain relief for failed back surgery, cancer pain, and reflex sympathetic dystrophy – a nervous system disease- arachnoiditis, scarring of the protective layers of the spinal cord and other problems. By delivering muscle relaxants, the pumps can treat cerebral palsy, multiple sclerosis and stroke.

The pumps are programmed while implanted by computer. They can be removed surgically, and their batteries typically last between five to seven years.

Source: The Mayfield Clinic, based in Cincinnati, Ohio.

Adam Wilson covers state workers and politics for The Olympian. He can be reached at 360-753-1688 or awilson@theolympian.com.